Just another BlogDumps Bloggers weblog

Archive for the 'humour' Category

The day was drawing near and much to be done. Fred would ‘berthed’ in the family room where we already had the tv and fireplace. The previous owner of the house had added it next to the living/dining room so, from there he would be able to see through the doorway to dining area and kitchen…all I had to do was widen a door and get one of the kitchen walls removed. While I was at it, the back wall of the dining area had a window which could come out and a slider put in, leading to a deck I’d have built. The good ol’ ‘snowball effect’. All I had to do was decide the starting point and find a contractor. I chose getting the slider in, first. It didn’t take too long and as the guy was finishing up with the slider he asked me what I was going to do next…did I plan to have a deck built? I looked outside at the 2′ drop from the new dining room slider to the back yard…”Actually..I’m thinking bungee jump…” Did I plan a deck…sheesh! A contractor came to remove part of the dining area/kitchen wall and build a breakfast bar as both divider and replacement for the dining table and chairs, now long gone. Of course that meant new flooring throughout living/dining/kitchen, painting of all this area and then I realised the doorway to the family room needed to be widened, not just to accommodate a wheelchair but offer a better vantage point and view for Fred to see what was going on ‘next door’ as I (and the dogs) was going about the daily business of chores and care. The deck was built, complete with ramps and, for now, everything that immediately had come to mind was done. At some point I wanted to have a second bathroom added on to the family room for his comfort and convenience. Since his ‘awakening’ he’d been accustomed to his nightly shower…infinitely preferable to a bed bath…but there was no way of continuing this at the moment. Then I remembered I needed to have the front door widened and a ramp installed from there to the driveway. I knew I’d never be able to get Fred into our car but at least would then be able to take him outside for walks. For his 21st. birthday, my sister arranged for her son…my favoured nephew…to fly out and see his beloved uncle. Since his Dad had left them when he was seven, Fred had pretty much taken over the role of Dad, they were very close and my nephew idolised him. He was coming to help me get Fred home and settled. He arrived a few days before Fred’s discharge and, of course, I was still making trips up to PA to see him and finalize arrangements so we took that last journey up there two days before Fred was to come home. The hospital bed was delivered and ready, as was the feeding pump and stand. All necessary supplies had been bought. We were ready!

July 31st. 1992, Fred came home after his almost ten months absence. It must have been somewhat confusing for him..he didn’t seen to recognise where he was and, into the bargain, he had again not travelled well but been very sick on the long journey home. This was it…jump into the fray and get him cleaned and freshened up before getting him in bed and it hit me…we were on our own! I didn’t know how we would do it but do it we would and, hopefully, without any break or change to what had been his routine for the last eight months. Except there was one thing I had not thought of and no-one mentioned…a wheelchair. I didn’t have one nor did I know how or where I was supposed to acquire one. We had talked about it at the centre and I think I assumed that they would have taken care of that…CHAMPUS would have…and it was just a matter of waiting for delivery. Meantime, intent on keeping his routine as close to what he had been accustomed, I went out next day to rent one from a medical supply house while my nephew stayed with Fred. Didn’t take long to learn a rented wheelchair just would not do! A regular wheelchair would not do…he would need one built specific to his needs, height etc. I brought the chair home and next morning we would get him up, as usual. It seemed logical to me that I would sleep in the family room. This room was 28′ long, front to back, 12′ wide…doorway into the body of the house and directly opposite this doorway was one going out to the screened porch where our ’67 Fairlane was stored. (I only mention this since it would seem much easier had I put a slider out to the porch instead of having to have a deck built out back and ramp out front but there was nowhere else to put the darn car). But the room was basically in two sections, ‘divided’ by both doorways. I had Fred’s bed and equipment in the top half, facing the opposite end where tv and fireplace were. In that half were our recliners, sofa bed, grouped around tv and fire. Sleeping there I would be aware of anything and everything, 24/7. I was confidant! Actually, at that point it was more bravado than confidence and while I know I never would have changed my mind on bringing Fred home it did cross my mind it was insanity. Here we go…

I didn’t sleep at all the first couple of nights, always getting up to check the feeding pump, his breathing, despite the fact that I would be up every two hours, anyway, to change his positions. Mornings, I’d be up to grab a cup of coffee before getting started then do his bed bath, shave him, get him dressed and get him up into the chair (we didn’t have!). Having brought a rental chair home, the following morning I did get him up and into it. This was not going to work…the seat was a sling-type and he needed much more support than it provided so he slumped. I was grateful for my nephew being there for, together, we managed to get a pillow under Fred. Didn’t help much but was the best we could do. There was also no neck or head support so, more cushions and pillows. No question I couldn’t keep him in this wheelchair for very long and also that once my nephew had returned home, I could not even come up with any possible to even get him in this particular chair with a modicum of comfort and safety. But for now, and with my boy’s help, we could wheel him into the main part of the house, show him around. He seemed happy at seeing the dogs, didn’t show much recognition of his surroundings and he certainly seemed to very taken with our nephew, almost as though he remembered him. And then came the first hiccup…bordering on panic.

The weather was very overcast that day, tv was on and late in the afternoon a tornado watch was announced. Tornado?? I hadn’t even thought of such a thing…surprising, since the very idea of tornadoes scares the hell out of me at best! These watches and warnings always made me nervous…nowhere to run, nowhere to hide, least of all in a rancher with no basement, no safe place. Not that that would have helped. What to do and where to take a man as helpless to help as Fred was? And I couldn’t just run off screaming, leaving him in a bed! Then I had my nephew and his, then, fiancee. I instructed them that if it looked like the weather was worsening and a tornado imminent, they had to run for the bathroom in the hallway. It was between it and a little hallway behind it, at the back of the house which housed our laundry area and seemed the safest place for them to take cover. He argued, wondering what I would do, what could we do with Uncle Fred. The only thing I could come up with was “we just have to take our chances”. Hopefully this watch would pass soon and then I really would need to think about this. Fortunately it did.

In the few days my nephew had left with us, it gave me a chance to get out for anything and everything Fred and I would need, stock up…to call around the various home nursing services to arrange for someone to come in on occasion, allowing me to take care of banking, shopping, things that were necessary to the running of a household and providing for Fred’s needs. The VA had come through with a disability pension for him which was a boon in helping to provide those needs but I also had some appointments with them to have everything explained to me. For that they would come to the house. I was still in contact with the centre for final paperwork, they checked to see how Fred was settling etc. and I asked about the wheelchair. Which is when I found out that this was not their responsibility or CHAMPUS’s. Now it was the VA’s and I had to file a request for someone to come measure and fit Fred to one appropriate for his condition. As it happened, once I did it took a couple of weeks to get the home visits, measurements, and a number of weeks before his wheelchair would be ready. My nephew and his fiancee returned home and now time to settle into a way of doing things which would become the pattern. The rental wheelchair had been returned after that first weekend…it served no purpose…but somehow I still had to find a way to get Fred up out of bed, at least a couple of times every day.

Brilliant! I would move his big recliner across the room next to his bed! I knew how to get him out of bed, could swing him around and into his chair and, voila! Yaaayyy! It was the next Sunday…a week after Fred came home. Bathed, shaved, dressed, shod..sitting up in bed watching as I shoved this huge chair over, got it positioned and we were ready. Got him upright, feet on the floor, up, up and away, swung him round and lowered him into his chair. Tah-dah! Made it! Positioned a couple of pillows on either side of him to help prevent serious slumping to either side and a light throw over his legs. Being a recliner, I could at least change the leg position every half hour, too. I was actually quite proud of our accomplishment…but, you know what they say. Pride cometh before a fall! Two hours later, time to get him back in bed for his rest period. This was necessary for, as much as he needed to be up in a chair fatigue would become very obvious, particularly since a recliner wasn’t ideal for him though better than nothing, I thought. Okay…stood in front of him, his right leg between my two and arms under his shoulders, lift. Lift! LIFT!!! Nothing…I wasn’t lifting. Heave! Nope. I could not get him off the seat so much as an inch. And I couldn’t understand why. Tried a few more times…no. Stepped back and surveyed the situation. It seemed to me it was because the seat of the recliner was slightly raised to the front, dipping back a little at the rear and I knew then I was not going to get this man out of that chair without help. Called Tom, the neighbour. I did hesitate for a few minutes. It was my decision, my choice to bring Fred home..knowing then, as now, I had to be able to do everything, every little thing for him without help, without needing or having to depend on calling a friend or neighbour. Paying for a nursing assistant was one thing but asking others to help me could not come into the equation. This was my first emergency. But no-one was home next-door. Among the neighbours we had come to know, nearly all were elderly and the others I didn’t feel we knew well enough to impose. Off to the linen cupboard. I’d get a sheet, wrap around Fred from back to front and under his shoulders, wrap each end around my hands, pull up up and outward. I explained all that I was going to do…he looked at me wide-eyed, a bit disconcerted. Didn’t take but one attempt to know I didn’t have the height to do this…even if I could raise his butt from the seat there was a vision of the 1’+ difference in our heights (combined with his dead weight) sailing over my head and toppling us both. I even considered…and discussed with him…the possibility of lifting his legs up onto and across the bed, pulling and pushing the rest of his body over from chair to mattress then turning him lengthwise. At least he laughed! But the chair was lower than the bed so this was a no-go. I’d left a message on Tom’s answering machine for him to call when they came home and he did, about two hours later. By then I was almost in tears…frustration, feeling useless but mostly seeing that poor Fred was exhausted, obviously uncomforable having been in this chair for much too long. At that moment I felt I had done everything wrong. Tom came over, I told him what I thought he needed to do, I did my part and with a little bit of struggle did finally get Fred in bed…at which point I vowed to myself that, despite what I knew needed to be done, he was not going to be getting out of that bed until either his wheelchair arrived or I could come up with a better temporary measure. I opted for the latter. All evening the mental wheels were spinning on what I could do about the recliner to make it so getting Fred in and out was manageable for me.

Eureka! The very thing! I’d get him a lift-recliner. Not only did I believe I could use it to get him out of bed, for now, but later we could use it just for him to sit in, a change from the wheelchair (once we had one) and give him some sense of normalcy. By first thing next morning I had the phone number of a dealer, called them at 8am. They had one in stock, asked what colour…I didn’t care, could be purple with lime green polka-dots…how soon could they deliver? Next day! When it arrived, I’d already given the other recliner away to fit in with my plans. The lift-recliner was positioned by Fred’s bed and I did try it out before the delivery men left. Wasn’t perfect but it worked…I could get Fred into the chair no problem and to get him out, just raise the seat up a little to where he was halfway upright and then, to bed. At the same time, once he was in the chair, I could get behind it and push chair…and Fred…across the room to the sitting area where he could be in his chair to watch tv with no hospital bed, other medical apparatus in view. We would do this for about three months…until his wheelchair was delivered. Next??

We remained at the centre for three days. The day after Christmas our friends arrived around lunchtime. These were the first visitors Fred had had, besides me, since being there, and of course I was excited to tell them of the big event of the day before. It was temtping to keep asking Fred questions which could only be answered by a nod but I was careful not to do so. His Mom went home before New Year’s…to be honest, I have no recollection of what I did Hogmanay that year. I know New Year’s Day I was at the centre and stayed on a couple of days to be with him during his therapies, when they resumed. Eating was proving to be a challenge…he had what they called a rotating chew which they said was good…and not often the case, normal in an adult as opposed to an infantile chew but swallowing seemed to be the difficulty. Of course the food being fed to him was pureed and I had to wonder if part of his problem was that he hated mushy, squishy foods and just was not going to get it down. He would pocket mouthfuls in a cheek and most often his therapist would have to then scoop it back out with a finger. The tough part…or one of them…was that when eating he would have to eat a specific amount in a certain number of minutes. I’m sure there was a logical reason for this but I would wonder if, had he more time, would he do better? Physio-therapy was typical…exercising his limbs, keeping his muscles fluid while maintaining some strength for possible improvement when he might learn to stand and, who knows…maybe even take a step? For now they would move him to a long table which would start out horizontal then moved, gradually, to an upright position. He didn’t do so well on this…movement upset his equilibrium, occasionally causing him to throw up. Days he did better, they would leave him upright for a few minutes at a time, lengthening the time frames gradually. Recreational therapy took various forms from wooden boards with blocks to fit into corresponding shapes, to cards etc. Fred could, by this time, move a couple of fingers on his right hand, nothing on his left…but he could not lift or move his either hand. He could move nothing and he could not verbalize in any way. The days I was there I’d try feeding him some treat or other, periodic moving his arms, legs. I’d take over the putting on and taking of the four splints when necessary, freshen face and hands throughout the day and tend to his oral hygiene. That was probably the toughest. First couple of times wasn’t too bad…he allowed me to get the toothbrush in his mouth, brush, and get it back out but since he didn’t eat we had a problem with his tongue. I learned that for people who cannot eat, papillae on the tongue will overgrow and we needed to brush or scrape his tongue. First time I did this he clamped down on the brush and I have to admit I was surprised at the strength he still had. Nothing would induce him to let go, to open his mouth and there was no way I could pry open his clenched teeth. I couldn’t run for help or advice…didn’t dare leave him with this object in his mouth and risk choking. So I hit the call button. We all laughed about it later for his night team hadn’t realised I was still there so to be called to Fred’s room…they ALL showed up! We cajoled, physically attempted, to get his jaw to open but…nope. All I could do was sit it out. One of his nurses told me that a few days before she had been using a tongue depressor when he bit down on it, so hard that she was sure it would split and this would not be good news. I could see that! All we could hope for that he would soon fall asleep and his jaw muscles would relax. I told them that from now on, I wasn’t brushing his tongue…I’d leave it to them. Before I left for the night I would make him comfortable, turn him on his side, packing pillows behind him. He needed his position to be changed every two hours…one of the keys to helping prevent bedsores. So far we had been lucky…he had none and we wanted to keep it that way. His head also had to be always be kept somewhat elevated due to reflux, if he coughed, anything that could choke him and unable to move to help himself. His face had returned to it’s normal slimness and structure, his body boney…considerably thinner than he had ever been before and he had always been of slim build. At least now he was getting showers, though…they would come in around 8pm, transfer him to a shower gurney and wheel him off. He’d come back fresh, clean and smelling of Old Spice. All in all, every aspect of his care was nothing short of excellent, from nursing assistants to physcians to dentist. First couple of times I met the dentist bemused me. A tall, very distunguished-looking man with permanently jovial features. He wore dark slacks, white shirt and a very colourful bow-tie, picture or cartoon buttons on the shirt and lace-up sneakers. It was about the sneakers…each one had bright, colourful, cartoonish laces with bells or other baubles on the ends. I asked one of the nurses if he always dressed this way and was told he did it for the patients…just another ‘stimulant’. Thus were our days at the centre. Days at home were catch-up for the business of running a home, learning as much as I could find about coma, the legalities, filling out reams of paper-work.

Not the least of those was filing for guardianship of my husband. Once I had applied to the courts I learned that an attorney would be appointed to serve on Fred’s behalf. He or she would visit the centre to assess Fred’s condition, back to the court and then it would be decided whether or not I qualified. This was a worrying time. I mean…I had been his wife, mother of his children, for going on 27yrs. Taken care of our family, household and finances the few times he was serving where we could not be with him at all or would take a few months for us to get there. But what if they didn’t deem me suitable? There was no reason to me that this would happen but the decision was not going to be mine to make. I had never known anyone who had become the legal guardian of a loved one so had no idea how the process worked or was decided. And having to interview Fred? Visit with him? What would they glean from that when he could not respond to questions, tell them what he wanted, nothing? What would I do if if guardianship was not granted to me? Frankly, I didn’t know. From day one I had no other thought than to take care of this man until “death did us part”…whomever went first. To think that a court or some stranger would be appointed to direct our lives, make decisions for us that we could not balk against…that would be unacceptable for me. Oh, well…cross that bridge when I came to it. Meantime, I received a letter from the court telling me date and time their representative would be visiting Fred. It was a woman and she would be flying into Pittsburgh to be at the centre at 11a.m. My visit a few days prior to the appointed time, I notified the staff at the centre of this pending visit and I said I would be there, I wanted to be present for the proceedings and, if possible, not to allow her to see Fred until I arrived. That morning I left at 5am (normally I’d leave home at 6) and drove like a bat out of you-know-where, no stops. Too late…she had already been and gone…insisted she could not wait as she had to get back to Maryland as soon as possible. I was frantic…and pretty much stayed that way until a couple of weeks later I had a letter appointing me as Fred’s legal guardian and outlining all that this would require. It included a reminder that this guardianship could be revoked should the court see fit. Well, I wasn’t about to give them reason! Finally, I could submit a copy of this document to the insurance company and we would have income, again. It only took them another month or so to begin paying out.

Fred had been the only occupant of his room, since his arrival. One they called to let me know that they were moving him down the hall…just so I would know when I next came up and not panic! This was an even nicer room with big window through which he could see the quadrangle. A young man was in the bed by the window, Fred by the door. This young man…Joe…had made a good recovery from his brain injury. In a wheelchair…but he was now talking and even getting home visits on weekends. They thought this could be beneficial for Fred, company…someone to talk to him, seeing the other residents outdoors now the weather was improving somewhat. I then changed my visiting routine to go up on Fridays, come home Sunday. Joe was a local boy and his family visited on weekdays/evenings so there was much activity. Weekends, with no therapies, no Joe, the activity level changed so I figured I could take over as Room 101’s Activity Director. It worked out quite well and when Joe couldn’t go home, he then had company for the weekend. I soon learned that Joe was about ready for discharge…a few weeks and he would gone. Great news for him and his family! And I then reserved Joe’s bed for Fred…right by the window. In fact, when Joe left Fred was back, once more, to a private room. Only thing lacking was a tv. That had been Joe’s. I’d arrived on the Friday and when I saw the cable dangling, decided to take a run into town and get Fred his own tv. He was a little more mentally alert and seemed to be happy watching television, regarldess of what was on. I realised this one day when his CNA came into do various things and switched to “Days of Our Lives” saying, “Fred! Time for our soap!” Hysterical…I had never watched a soap in my life and the very idea of Fred thinking about doing it, let alone doing it, was hysterical. When she stepped out for a minute, I asked him if he was okay with this. His eyebrows shot up to his hairline, eyes widened…but he nodded yes…LOL. Okay, then…whatever he wanted! And no, I really wasn’t sure if it was what he wanted, perhaps just that the tv was on. So I’d leave them to it…Kim to do what she ‘needed’ to do for that hour and them both to watch their scandalous soap…and then she would comment and discuss it with him. LOL! I didn’t mind…I’d go to the smoking lounge and chat with other family members if they were there or read…and I was content knowing that there was a good relationship between Fred and those who cared for him. Each one had told me how much they liked Fred…he was a good patient. Oh, sure…easy to say about someone who didn’t talk back, couldn’t complain or raise a rucus (which, in normal health, he would have. The very little he was sick, he was NOT a good patient!) but while I say this, I had noticed that he really seemed to pay attention when they were asking or telling him what they needed to do, what they were doing and why and he was more compliant with them than with me. Apparently it worked for him and for me too, knowing I wasn’t and couldn’t be there every day while they were.

One day, while we were wheeling him to Speech Therapy and a try at lunch, we had to stop while his therapist ran back to the nurses’ station. I was standing by Fred’s wheelchair, talking to him…just chit chat about this and that and went looking in my bag for something. I noticed him watching me intently so began taking things out to show him. The first two he just looked, the third was the cheque-book. I took it out and held it up for him to see…he nodded slightly then his lips moved! “Do you know what this is, Fred?” He looked at me, mouthing “Cheque-book…” “What is it for?” I asked. Now, you might think that to be a stupid question to ask a grown man but no-one knew or had anyway of telling the extent of the damage done by the aneurysm. A couple of weeks before he had been transferred up to the centre they had asked me if I wanted them to do a neurolytic study…they didn’t expect much but it would give an indication of any brain activity going on. Of course they should do it. When they did and came to tell me the results it was not good…I asked them when they would do another and they wanted to know why they should. I’m not doctor but this was a first for that study. Okay, they actually found that there was nothing going on, basically no hope of brain function but…where was the harm in doing another at a later date. This one would be a base-line and only if they did another could they ever tell if anything was changing for his good, no? I mean, why do one if you don’t plan to do another? They never did…but then Fred was moved so I can’t criticize. And this is why I asked what would otherwise be an inane question. Again, Fred looked at me and mouthed “Money! Do we have any?” I wasn’t sure whether to laugh or cry…so did both. When the therapist came back and we resumed our ‘road trip’ I was telling her what happened. She was very excited…this was another first. But still he wouldn’t eat. We had him off the trache, wanted him off the PEG and all that would remain would be the catheter. They decided to take him to the local hospital for scan, endoscopy etc. to see if perhaps there was an obstruction or some physical difficulty preventing him from swallowing. Results came back…nothing, no obvious reason but probable vagals nerve damage. In PT, they now had him in a standing frame…they would wheel him up to the frame, two PT techs would raise him to his feet and attach safety straps, then lean him in to a little table top attached on which he could lean. This would be a prelude to learning to walk, if successful. Another ‘step’ forward. Once a month I’d meet with Fred’s team members and staff, we’d discuss his progress, problems and possible treatments. There weren’t many…he had had occasional seizures and I was aware that even with his medication, they would likely continue or at least he would be at risk for them. Despite the diligent use of his splints, there was severe spasticitiy in his upper body developing and, one day, I was asked if I would authorize them to do a nerve block which could help. They explained it to me and did say that it would not be without risk…that being it could stop his heart. I asked for time to think it over, particularly since it was not an emergency situation. However, I was sure I would agree and sign the consent form. The director…a neurologist…would do it himself so I asked for day and time and that it not be done until I was present. They had no problem with that.

The morning of that day I was, once again, up and on the road earlier than usual, dismayed to find it was pouring rain, windy and was expected to last all day. I wasn’t wild about driving in those conditions but had no choice. Traffic seemed a little heavier that morning and, as usual, I chose to drive in the middle lane. At some point I needed to pass but there was a car to my left, maintaing a constant speed and not allowing any room for me to get in front to pass or even get behind him. Two people in the car…probably old, I thought. We drove like this for about thirty miles, still in the same formation and no way of bettering it for me. Finally, I noticed the car to my left was gone, I moved over and sped up. Travelled about ten miles in the fast lane until I came to the top of a hill, on a wide curve when I moved back into the middle lane. I’m driving along quite happily, up another hill, over in the fast lane, listening to a music cassette. Then I noticed an odd sound I couldn’t identify…seemed to be coming from the tape. I looked over at the tape-player like it would give me an answer, turned up the sound…that noise was still there and I knew it was not there before. I’d had this tape for twenty years, for crying out loud…never heard this before. Oh, well…no big deal…and then I looked to my right. This car which had annoyed me earlier was back and now seemed to want me to get out of the way so he could move back into the fast lane. Well, at that juncture I couldn’t…looked back at the driver and shrugged. Was he giving me the one-finger salute?? How dare he! Well…too bad. I stayed put, looked over yet again and to my horror the driver now had a hat on…a very attractive State Trooper hat! And that had been no ‘salute’…he was pulling me over! Zooming down another hill, pouring rain, I got in front of the car in front of him, and gradually came to a stop…and ready to pass out! He pulled in behind me and walked up to the window. First thing he said was, “Ma’am, you and I have travelled a good portion of this road together. I’d say about thirty miles? You were going a little over the speed limit but I let it go. NOW you were doing 85 miles an hour!!! What were you thinking?” And, by the way, yes…I did know how fast I was coming down that hill. I gave him my licence, insurance…he studied the licence then said, “You’re a far way from home this early in the morning??” I told him I had an appointment up in Pittsburgh, had to be there by ten (BTW, enough time and trips had gone by I knew I could do this journey in five hoursm with my breakfast stop…and we won’t even discuss at what speed). But I was proud of myself for one thing…I was wrong, I knew it and so be it. I didn’t even think about trying to get out of it with telling him where I was going, why and what for. (That didn’t stop the staff at the centre giving me such a hard time about it when I told them I’d been pulled over for speeding!) And then the trooper surprised me. “Okay…for the travelling we’ve done together, this morning, I wll say you seem to be a careful driver, a good driver, using your lights, indicators…I can only fault you for your speed. If you want to get to your appointment, I suggest you back it off! I’ll give you a warning….” Phew! Could not believe he would be this generous. Then he said, “What part of Scotland are you from?” When I told him, he was familiar with the area and then he tells me he’s Irish…”And guess what? My vacation starts in two days and I’m going home to Ireland!” We had a lovely chat, he cautioned me again to slow it down and be safe, I wished him a wonderful vacation and a safe journey and bid each other good-day. And don’t think I don’t know how lucky I was!

Oh, the two people in his unmarked car? Just him…but he had his hat sitting on top of the headrest of his passenger seat! He told me he was on his way to court, in Cumberland. I might be a Scot but that day I had the luck of the Irish. Doubly so, when Fred had the nerve block and suffered no ill effects.

Well, not really. I had our two dogs for company when I was home and glad of them. Days became even more routine than previously. Up in the morning, see to the dogs and then off to the hospital. Sometimes I would accept the neighbour’s help in letting the dogs out and seeing to their feeding but more often I’d take a couple of hours to drive home and see to them myself…I just felt so badly about leaving them every day for so long a time. Blanche did go home, I continued my daily sojourn to the park, feeding the little squirrel who had become my faithful companion (well…as long as I showed up with his bag of nuts!). Fred had ups and downs..spiking fevers, breaking them, yawning, sneezing, eyes open, eyes closed. All the while I was at his bedside I’d hold his hand, stroke his arm, talk to him, brought tapes of the dogs barking, phone ringing and me answering it, anything I thought might strike a chord, somewhere. One thing I did continue to see was his BP would change soon as I touched him, eyes on the monitors. I don’t know why but somehow I believed he knew someone was there, not surgeons, not nursing staff but, regardless, we were all playing a waiting game.

A couple of days after he had been admitted…think it was the day of his surgery…a young wife and mother had been brought in. She was fully aware but had an opthalmic aneurysm. They operated, she came through the surgery but something not quite right so it was deemed best that they induce a coma to rest her brain and body, to be brought out of it within a few days. Sadly, they could not bring her out of it. Her parents, her husband, spent the same hours waiting and we at least all had some companionship. After a couple of weeks, they began talking to both families about where we should go next…that would be a long-term nursing facility. I rebelled. Incredible or not, he had been conscious when he was brought in. Now he wasn’t and, by this time, I had secured enough information on coma treatment to be frustrated. As much time as I spent at his bedside, I didn’t see the stimuli being used…the scents, touch. Someone would come to his bedside and ask him a couple of questions which he never did answer or acknowledge. It seemed to lack conscience to me that they expended all of their skills to save his life when it appeared they had only prolonged his death. No, I was not releasing him to a nursing home until all avenues…and some extended time…had been explored. I’d always been a very quiet, passive person. Any problem needing a strong, authoratative voice Fred had handled…for both of us. Always my advocate, someone had to be his. That was me by default. And it was amazing to me how easily I slipped into that role after forty years of believing I couldn’t do it. Probably just a case of fighting for the rights and well-being of one who cannot do so for him or her self. Deep seated anger at the turn life had taken helped. This young woman’s family was going through similar turmoil…probably worse since it was both parents and husband, not always on the same page. One thing which had been so supportive and encouraging to me was a talk Blanche and I had had, just a few days after her arrival. I was hesitant to broach the subject but, at least for my peace of mind, it had to be done. I asked her for her thoughts on if the day should come when someone might ask me to make a very crucial decision. No-one had suggested ‘pulling the plugs’…yet. Hints had come that the day may arrive but not so far. Fred and I had already discussed such a situation and both of us were of the same mind. Not to be kept alive by machinery, feeding tubes and certainly not if either of us were in a vegatative state. We had not formalized our wishes in writing only trusting in each other to carry out our respective wishes. I did not tell Blanche this, at that time. I needed her honest feelings and then go from there, trying to respect her place as his mother while effecting his wishes. And she was stuck. As a mother she had no desire to lose her child…and no matter how old our offspring are, they are still our babies, be they 8 or 48. Having lost our only surviving child just four years previously, I could imagine her difficulty. Further, I well-remembered thinking that when my daughter died I would have given the world and everything in it to have her here, regardless of her condition. Selfish, yes…but never ready to give her up. She did ask me what my thoughts were. I told her of the conversation Fred and I had had in the past and that I would really like to honour that if and when called upon but did add that her, being his mother, I would be attentive to her needs as much as possible. This poor woman couldn’t have been more supportive, telling me she knew I would only ever want what was best for “Freddie”, always had done so and whatever I decided was good enough for her. At that point I had no idea what I would do now such a decision was highly probable in our future…just hoping I could live with whatever the ‘right one’ would be.

I found one of my most major hurdles were finances. Fred’s company offered long-term disability coverage. He had chosen to pay more for the coverage which would become effective immediately in the case of any injury or disability rather than one which required a waiting period. His HR office had been exemplary, getting the paperwork to me within a couple of days of his being stricken. Likewise, I had completed it, immediately, and got it back to then. Then the insurance company decided they were not going to pay. Finally, I was able to talk to them myself rather than through HR. HR had been very good, done just about all they could, to no avail. Came the day I talked to a rep from Aetna who told me, in no uncertain terms, they were not going to make payment without my husband’s signature. Excuse me?? Did they read the application, the diagnosis, the prognosis? Yes…they had…and they still would not budge. I asked them to check on his life insurance coverage with them and tell me who the beneficiary was, there. They read out my name and relationship. I asked if that should not be sufficient and my answer was…”No…he isn’t dead. Just in a coma…” Just?? So how does one get a comatose patient to sign papers, to do anything? Apparently that was my problem to solve and the only means available was I had to become my husband’s guardian. I spent days getting the information to do this, much as it went against the grain to do so. I did not want to be his guardian on an emotional level. I did not want to think, let alone believe, he would never again be the logical, super-intelligent, practical man he always had been. No matter…I had no choice it seemed. At the same time, legally becoming his guardian was to cost me upwards of $1500 which I did not have. In fact, I had no income other than his Navy pension which, thank God, was on direct deposit to our bank. That was less than $1,000 a month, our mortgage was a little over $800. Not to mention every other little bill. Frugality made no difference here. I honestly had no idea what I was to do. His company HR continued to keep in touch so eventually they learned…to their horror…the situation I was in with the insurance company. They attempted to talk to them, I talked to them some more until, finally, the HR office had one resource left that might help. They had their corporate attorney contact Aetna to ask if they could make a one time payment of some of the money already past due me. The answer, initially, was no. Of course other things were going on…another of my neighbours, an older man who was involved with Veteran’s Affairs…suggested that I go talk to the VA as there may be some help coming from that quarter. I made the appointment, decided I probably should gather all of my husband’s military documentation including his medical record, before I went. I knew he had hearing loss attributable to his navy career, also the BP was considered the same since he only acquired HBP some years after enlisting and while he was still on active duty. He could have filed with the VA before getting so sick for both of them but we both believed they were minor enough not to extract any more money from their coffers while we could afford to tend to them ourselves.

So, one night I thought I probably should go through his medical records before talking to the VA. I didn’t know if there was anything which could be helpful, I didn’t have a clue as to what I was dealing with but I dug it out and began to read. I suppose one could say I lucked out…we both lucked out although that ‘luck’ wasn’t exactly a word I’d use during those weeks. As with all career military members, they are required to undergo a thorough physical before being retired. Presumably to find everything that could be a problem then or later, also so noting by absence something that was not attributable to a military career or service. The very first page contained the notations from that physical. It was written that he had an aneurysm in the brain and “we should conduct CAT-Scans to make determination and follow…” I looked…all the way back to when he had his first medical notation when he began his career…25yrs. worth. Nothing. No-one had followed through, nothing more had been done and his new-ish, retirement medical records contained nothing about aneurysm. I made copies and I turned the paperwork into the VA. If any help was to come from them I knew it was not going to be immediate, if at all. Social Security disability also had to be filed for which, after two months, I did. That would take six months, I was told.

Along came my birthday, October 23. By then, Fred had been transferred into a two-bed room. All machines had been removed though he continued to be hooked up to oxygen and, of course, dependent on the PEG for sustenance and fluids. No change, otherwise. I had noticed…and mentioned to the nursing staff…that when I would now enter his room and call out his name, ask how he was doing, his eyes would actually open. No turn of the head, nothing else…but the eyes would flick open. That was a sign of sorts, yes? No, they told me. Spontaneous reflex or just coincidence. One afternoon I had brought some ice into his room, took a cube and ran it down his side…from under his arm to his hip. He flexed! I next did it with my fingers…nothing. Again with an ice-cube…flexed. Off to the nurses’ station to tell, ask. Nope…reflex. I was beginning to question what I knew of our senses. If one could respond obviously to one touch, yet not another…was it simply reflex or was he feeling the difference? And yet I’d periodically take my keys and run them along the sole of his feet, up his legs…nothing. One evening, the wife of friends of ours had accompanied me to visit Fred. While she had been in the waiting room she had overheard another family talk about bringing their Holy Water to use on their family member. Viola remembered that when her parents had visited from Italy, a couple of years ago, they had brought a vial of Holy Water blessed by the Pope when they had taken a weekend in the Vatican City. She asked if she could bring it next day. I’m not Catholic, not religious but not proud or stubborn enough to refuse help from any quarter and it was a generous gesture. Next afternoon, each of us on either side of Fred’s bed, she gets the vial out of her purse. We looked at each other, nodded and she was ready to annoint Fred. I simply stood holding his hand and watching him very closely…for what, I had no idea. She touched the water to his chest, his arms, his legs, throat, heart and, lastly, across his forehead. And I almost fell backwards through the room window when Fred’s eyes shot open. I mean they shot open and wide-eyed…as did mine! Viola could only yell, “Oh, Jesus!”…and it was not an epithet. Personally, I actually thought it was his last physical act before death. We had killed him for God’s sake! Took us a few minutes of watching, waiting, to realise we had not…and trust me, this was an experiment I had no intention of relating to the nursing staff! Oddly enough, Viola nor I said word one to each other, just carried on with our visit for a few more minutes and then left to head home. It was only as we were out of the hospital, crossing busy evening hour Green Street traffic, that I came unglued, began laughing hysterically that I could not even walk, stopped right in the middle of the roadway. She had to drag me to the opposite kerb. How, I don’t know for she was as bad as I was. We plunked down on the kerb until every bit of nonsense was out of us. She admitted she thought she had killed Fred, I told her I was sure she had, both confessed that each was afraid to tell the other. But we had never seen anyone’s eyes fly open so hard or fast…and the worst was Fred’s eyes just staring, coldly into nothing.